My health issues involve autoimmune and genetic, I have suffered from Erythromelalgia for the last two years, I received a drug called Rituxan and my Erythromelalgia is mostly gone. Just thought I would share a treatment that has worked for me. No one knew this was going to help this problem but it did.
Maybe someone somewhere can find a connection.
That Erythromelalgia has been the biggest nightmare of my life and I am so happy to feel better and hope this may help others.
Hmm. very interesting I wonder if you had a rare form of Pox Virus. The Chinese pox virus that gave some EM could be given to lab animals and the lab animals developed EM as well. The cure for that pox virus in animals was a monoclonal antibody. Just a thought. Did they say you had a virus?
Interesting @watchman, I have several auto immune diseases but not sure about a pox virus. I just had another round of Rituxan and again it solved my problem of the EM. So it for sure helps me walk again.
I am so happy to be done with the ice, no socks and not being able to walk. I appreciate the support group and hope everyone can find that 'magic bullet' !
Very interesting and it brings hope that if we keep going we might find the magic bullet that works for each individual case.
Autoimmune diseases can cause immune responses that trigger the body to send blood to cure a problem that doesn’t exist. At least that is my very brief lay understanding of what could be happening. In that case, if your autoimmune disease was triggering an immune response to cause EM, then by somehow altering you immune system with the drug, you would be fixing the immune disease in some way obviously or in some manner. Which would mean your EM was secondary in relation to that. The treatment of you mix of autoimmune diseases or specific one, would be solving the immune problem that caused the EM secondary flares. Of course that is an obvious explanation. And might even be the best one. But there may be no way of knowing if it could help solve other cases of course, to state the obvious, unless thay had the same cause and reaction which triggered their EM. Probably any solution to EM would benefit from good documentation of how it helped their neurological system or what was causing the EM and how those were determined to be the disease problem that caused the EM. So more knowledge and learning from a solution is a good thing hopefully for the EM community.
Of course my disclaimer is I’m just a guy who reads on the Internet and uses my lay knowledge to say what I think is happening. Part of the problem with neurological diseases, which are for the most part causing neurological pain, is they are kind of narrowly classified into a camp of being a nerve related problem due to damage in the brain, nerves and signaling. Which is damaged some way often by something attaching itself or hurting the nerve, interfering with its function. Those kinds of diseases present pain in a part of the body away from the nerve, hence neurologic pain. Some diseases, like EM are considered neurological pain. And that means the pain and problem is related to the nerves, which could be far away from the point of pain. And if the pain is being caused by the nerves sending pain signals, at the source, then the cause is often a kind of problem that is a disease affecting the source site. So it may be thought of as secondary. And EM that is a result of a treatable, or untreatable disease, but a known disease. Then those diseases that cause a malfunction in the system that can be many can be classified as primary causes of EM. So people who get immediate EM without a known cause are given a catch all phrase of primary, because it didn’t appear from a known disease. Ironically there are many causes for EM, it’s almost like its a catchphrase like the common cold or something. And when we figure out what caused it and how that other disease may be treated to stop the EM reaction, we start to call that a secondary EM from a known and often common disease.
But the details of how some of these things works remains a mystery often to science and the experts even in the neurology field. So it’s becomes a big and complex mess to figure out. Using very basic lay terms. The neurologists give tests to get specific causes and may have a set of drugs that show a pattern to helping those kinds of problems. That’s basic discovery of a solution that helps a common problem. But they may not always know how these things help with low level details. And if they know and scientifically tell us the reasons it’s so complex involving chemistry and pharmacological reactions, the lay person without medical skill in those fields has no idea what they are talking about. We just end up trying a cure that the experts found works.
I know there are others on the board that can give more insight and knowledge on this stuff, so I’ll stop with the comments here. I’ll actually end it by saying it’s interesting to see new things discovered and these rare diseases are so rare most doctors don’t even get a chance to see them and read about them on the net like the rest of us do when they get the chance to discover and observe a rare disease. The doctor with time and patience and who is interested in learning more may have the time to research a bit and document the symptoms and details that could help others who suffer from the disease or throw new light on how to treat a rare case.
One of the problems I can easily see is there is so much detail, in basic differential diagnosis for rare conditions, so many things to test for, and there is so many things that can beninterplaying in something like a nervous system condition, how can patients and doctors get good measurements and control studies to determine that something will work and what is even affecting a disease or syndrome like a burning foot syndrome? If there are fifty triggers or a hundred triggers to your disease. And they are not all measured and kept in somee kind of starred control, how can we know if a change has helped that complex disease, or if it was just a coincidence. We can’t always know with certainty, this is my opinion of course. But a full recovery or good result with a basic single change like a single dose of medicine or medical approach will hopefully show a path that helps that type of case and shows recovery or help for that kind of symptom. I know I’m stating the obvious, but as a witness to complex health issues it can be baffling, because in my unlearned research and gathering of info as a non medical person it become difficult to even see what is important and may pertain to the health of my relative with EM and what means nothing and can’t help her.
The differential diagnosis for EM and what can cause it or be something that is causing spmething like EM is a huge flow chart. And that chart will if course show a ton of options which causes doctors to spend a great deal of time before they even find the EM diagnosis. With a mixture of diseases, it can make their task all the more difficult.
This was good information, and good news. Thanks for the information. Please let us know of any updates that might help others.
As far as the pox virus test, I don’t know if there is much information on how it can be tested and verified and there is also some doubt that it could even happen in places away from where it happened in China. In one case doctors reported finding the virus in the throats of those who suffered. My mom had a kind of thrush in her mouth during the onset of her bad EM case. So things like the reports in China about a pox virus would trigger our curiosity. Was some kind of infection with a virus in my moms throat at the onset? And did that virus enter her system, like a kind of virus that may lie dormant in the nerves and cause other more common problems? How would we know, and how could we trace that? Would the Chinese reveal the test and could it be easily found? Would the antibiotic kill the virus in an EM patient and solve those problems for others who had it? And was this even possible? Was that on the market and available? We didn’t hear about more details for years about that and details are still difficult to find.
A guess by one MD and speculation by him was that the chances of a pox virus affecting us was rare, and highly unlikely. That it was probably localized to China. So his educated guess is probably better than mine. But the fact that a polyclonal antibody affected it from reports of the animal version and it helped yours shows interesting hope that some other approach perhaps from rare antibodies can help some. Maybe they are related. Would a swab of your throat show some evidence of a pox virus after your treatment? Is it worth the pursuit or just a coincidence. Maybe your doctors could tell you.
I don’t know if it’s ever been detected outside of China, but I find it very interesting that an antibody helped your EM. Who knows some EM symptoms could be caused by some rare and hard to find virus, but tests should show the virus and doctors should be finding it or antibodies to it. Maybe there is some kind of magic interferon like bullet that can help some EM sufdering patients who have a virus that would be discovered. I guess we will find out more over time.
Also the body is probably a million times more complex than my simple understanding of it, so take my comments with a grain of salt compared to medical experts who know a lot more.
Thank you @watchman for all the interesting comments you wrote. My health issues are rare and are complicated - the Rituxan wasn't given for EM of course but I got very lucky that it stopped it. I was wheel chair bound for sure. I just thought I would come in here and mention that something changed my EM, I know the suffering is so great and I thought "what if" the RTX could help someone else.
I was given methatrexate at first and I noticed a teeny tiny bit of response in my EM but found the EM still very disabling.
Here is a list of my current health issues, just in case it helps someone somewhere! Thanks again for all your great sharing !
1. APECED
2. Ehlers Danlos
3. Disocid Lupus
4. IGg subclass, 3&4 - On IVIG for last 9 years
5.Small fiber Neuropathy
6. Autonomic Failure
7. Dysmotility of the entire GI system ( throat, stomach, colon- on feeding tube in arm)
8. Migraine
9. Asthma - that maybe COPD- just being worked up right now.
10.Autoimmune Polyarthritis
11.CFS- dx in 1980
So you can see I am a mess ! But the Rituxan has made a lot of positive changes- not sure my lungs are liking the increase in infections. I am loaded with fungus 24-7 due to the APECED.
Hi Hotfeet2z,
I just found out that I also have a IgG 3 subclass deficiency and I have been looking at whether of not IVIG is warranted.
My GP did the test. I also like you, have had ME/CFS for 19 years. I am wondering about the IVIG for EM also.
What type of Dr prescribed the IVIG for your subclass deficiency? Hematologist? Immunologist?
Thanks,
Jeff
Can you tell me what your symptoms was?